boolyblog

Sunday, June 20, 2010

I told you I was ill !!! (with apologies to Spike Milligan.)

Spike Milligan famously had this inscribed on his tombstone, a parting joke from an idiosyncratic icon of British humour. In "Adolf Hitler And My Part In His Downfall" and other autobiographies, Spike humorously described the British equivalent of the chaos portrayed in "Catch 22" and likewise exposed the shambles of war and the pomposity of authority.

I think there is a lesson here somewhere that the stuffier and more pretentious the institution, the bigger the shambles they are hiding under the carpet and in my opinion this maxim was never truer than when applied to the governmental wings of the British medical establishment especially regarding the inconsistent, almost contradictory attitudes towards research in ME and medical assessment for benefits which seem to me to constitute the very antithesis of joined up government.

For the record this is a weblog of my reply to a letter in the Bristol Evening Post concerning the dangers of disqualification from benefits for people with ME and the situation we are placed in by the attitudes of those who grace the corridors of power with their footfall, as they pass through.

QUOTE Anon. Bristol Evening Post, Friday, June 04, 2010

" Benefit system puts a strain on those who are already ill...

Following a medical/work capability assessment I was considered 'fit for work' because I 'didn't look tired' ... "

I have a specific immunological form of ME and was in a similar position due to an unfair disqualification by an ATOS medic at a PCA in 2002. After correspondance with the DWP via my MP I was advised by a government minister to get better proof. So I did what I was told and paid for a blood test of neutrophil mitochondrial translocator function which showed mine produced ATP energy at 17% (seventeen percent) of normal. Its no wonder I felt ill and still do.

The test is from a Biolab subsidiary called Acumen and is done by Dr John McLaren Howard. This test has been used to provide data for a scientific paper published in a peer reviewed journal called the International Journal of Clinical and Experimental Medicine. URLhttp://www.ijcem.com/files/IJCEM812001.pdf

I hope the author of the letter and others can find a doctor who can help them take this test and interpret it. The one medic in the UK who was willing to and able to do this test and cooauthor of the paper linked above has been barred from prescribing pending an inquiry into her website by the GMC due to an anonymous complaint. It stretches credulity and its no wonder patients suspect a conspiracy against ME, but I doubt it is anything more than the medical establishment's equivalent of a hooligan trying to make his mark on the world.

No UK medic I have ever consulted can explain why I have no energy or why I have recurrent viruses and raised allergies at the same time though from my personal research of Dr Paul Cheney's work in the USA I understand this situation makes perfect sense when you understand how the immune system works and indicates a serious illness. However not many working medics have time to keep up with the cutting edge of immunology nor do they dare to question orthodoxy lest they be singled out by the brownshirts of the medical world.

Not everyone with fatigue actually has this illness, some have blood sugar problems, some are overweight, some are depressed, some have thyroid problems. So some who claim to have ME might well have something else instead and it is a statistical inevitability that some, a very few I suspect, are skivers. So I can understand why the DWP want evidence.

This is why ATOS medics are under pressure to presume you do not have ME unless you can prove otherwise. So to prove I have an illness that has not been properly discovered yet I was forced to provide research level tests as proof that I am ill before that illness has even been properly identified and characterised. It doesnt make much sense but this is the way the system is stacked against people with this condition. Which hardly seems fair but that is the real world for you. I was glad to pay the money for the test just so that I could finally get people like ATOS to understand that I was not lying or skiving but ill. The problem is that based on my presentation in the surgery the average medic could not tell one way or the other and that's the truth of the matter.

You learn to conserve energy when you have so little of it. You count yourself lucky if by staying still and avoiding stress the symptoms remain minor, some are not so lucky. When you have ME and try to use energy you havent got it can damage vital organs and potentially kill you. Sophia Mirza died of renal failure after being sectioned for believing she had ME. Kidneys, you see, need energy. As do hearts, livers and brains, which can be damaged by attempting to use energy you dont have. That is the danger that the pressurised ATOS assessment represents for someone who genuinely has ME but doesn't know how to prove it. They could be forced to work themselves to the point of injury and death or otherwise be denied benefits. In the past, despite my BA(Oxon) I have been unemployed, homeless and destitute because of this disease and the complete lack of assistance I initially got from the medical community for the first ten years of my illness. This did not help my convalescence and that is the crime of the current situation. People who get ME could be helped, one day there may even be a cure. Currently their potential is being written off and they are being treated in a way which makes recovery much less likely, out of sheer ignorance.

Research is being done to distinguish subtypes of CFS using empirical tests which might be useful to benefits applicants and the NHS. It is being undertaken by Dr Jonathan Kerr at St Georges London. I give what I can of the money I save from my benefit to the CFS Research Foundation and MERUK charities which help to fund this team because I know its the right thing to do even if other people don't. Its not about money, its about finding the right way forwards for all our sakes. The UK government, specifically the MRC has not funded this kind of research to date. They know not what they do. The change in government would seem to be a good time to try to change the direction of this policy.

About Me

Before I became ill I like to think I was pretty normal. OK at school in Monmouth I was a bit of a rebel. Against the odds I gained a place at Oriel College Oxford to read Zoology. There I also enjoyed rowing and acting. In my third year (1986) disaster struck, a mysterious illness characterised by a recurrent virus and severe allergies sapped my energy and simply would not go away. It affected my mind and body profoundly. I fought to complete my degree over an additional year, then I became even iller and knew only that I had to rest. For ten years no doctor could offer a diagnosis. In those days in the wilderness, alone and ill, living in bedsits on benefit, I came close to the edge of reason. For a while I think I may have gone over the edge into madness but eventually I found my way home to the spark of sanity which remained. I survived, reason returned, then I acquired a diagnosis of sorts and began the painful task of mastering my delirium and learning how to manage life with a disease like AIDS crossed with schizophrenia. All the while still searching for the truth about it. I am now 53, a Zoology grad with an 'M.E.' diagnosis and way too much time on his hands.